Travel agent Melanie Saavedra is hoping to increase awareness of a relatively unknown neurological condition following the diagnosis of her son four years ago.

Eight-year-old Emilio was diagnosed with the neuro-genetic condition Neurofibromatosis, known as NF1. Melanie, who set

up homeworking business Travel Sense so she could devote time to her son, is raising funds for The Neuro Foundation charity to help families in a similar position.

Fundraising events.

Her ultimate goal is to help doctors find a cure for NF1, which affects the nerve tissue. The condition can cause problems including skin lumps, disfiguring but benign tumours, curvature

of the spine, brain and spinal tumours, increased risk of epilepsy and malformation of bones. It is more common than cystic fibrosis, but little is known about it. Melanie has just held her fourth annual charity ball for The Neuro Foundation, which raised £15,000. In April, 17 runners took part in the London Marathon as Team Emilio, collecting more than £34,000 for the charity on behalf of Melanie’s son. To date, the family has raised more than £104,000.

Emilio has several serious conditions. He was born with metopic synostosis and first had major head surgery at 15 months old before later being diagnosed with the unrelated condition NF1.

Emergency surgery.

Emilio’s NF1 diagnosis came when his parents found him in bed one morning in 2013 after suffering what appeared to be a stroke. Melanie recalled: “He couldn’t speak or do anything. He spent a couple of days in intensive care and had major seizures.” Emilio also suffers from hydrocephalous – a buildup of fluid on the brain – and has had multiple brain operations to fit a shunt to drain the excess fluid. In March, the shunt stopped working properly and he needed emergency surgery again.

“He suddenly went downhill,” said Melanie, “his shunt stopped drawing the fluid off his brain and he needed surgery to replace

the two sections of it.”

The future

Melanie, a former Going Places agent, added: “You don’t know what is round the next corner. Last year, Emilio had three MRIs under general anaesthetic, 35 hospital appointments and stayed in hospital three times. “Living with the unknown has changed our lives forever; every day activities are no longer straightforward. Emilio tires easily, has lost confidence and has a mild

learning delay caused by visual impairment.” The family, who have two other children, still have no idea what life will be like for